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Old 12-30-2011, 04:14 PM   #1
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Dystonia: Help

I have been sick for the last 2 months. In and out of the hospital and am being put on medication for dystonia. I cannot walk with out a walker and most of the time I am in a wheelchair. I have constant cramp in the left leg from the knee down and my foot in stuck in an strange position, toes up and arched up. I cannot talk above a whispher and my neck mucles are spasming. Have had ct scans, mri and all kinds of blood work. All normal. I am tired and fatigue ALL the time. I have pt and speech therphy but no help. If anyone knows any info for me I would be grateful!!

 
Old 02-20-2012, 03:35 PM   #2
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Re: Dystonia: Help

what type of dystonia do you have and what meds have you tried

 
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Old 02-21-2012, 03:40 AM   #3
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Re: Dystonia: Help

Hello Momwithdystonia:

I have an update on my condition. I had a trial run with sinment and NO results. I have had another MRI last week and still NORMAL. My neurologist is Finally sending me to a MOVEMENT Disorder neuologist in April but I am going to try to get it moved up sooner. My leg still shakes and the muscle contract all the time. When I get up in the morning until I go to bed. My doctor has not told me what kind of dystonia I have but he thinks its genetic and now has me on clonezapam ( i think thats how you spell it) twice a day. I have been on this since Jan. 25 and seems to be helping.. The only thing now is that it makes me so so so sleepy. The feeling in my leg has returned since on this med but now it hurts me so bad i have to take something for the pain.. I guess its an improvement but it hurts me so so bad.. Still have no voice and hand and neck spasms have improved very well since I have been on this new medicine.

What kind of dystonia do you have and what kind of problems are you having?

Have a good and pain free day!!

Lee

 
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Old 02-21-2012, 07:05 AM   #4
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Re: Dystonia: Help

My mom was thrown into this dystonia world by a beta blocker called soltalol mixed with her restless legg medicine requip. Dr's claim of course this isnt the case since soltalol isnt on the drug list but with her second pill her life changed forever! Mom went from working full time no major complaints (except for the irregular heart beat they gave her the beta blocker for and he started her off on the lifetime maximum dosage at that!) to now being completely bed ridden and totally dependent on a power wheelchair cant even use the walker any more or the cain. With all my research on the internet im finding she has secondary generalized dystonia (secondary because it isnt genetic it was medication induced, and generalized because it affects her whole entire body. My mom has muscles that twist and turn her in ways i never thought possible not even for the circus people who train themselves thier whole life to bend in weird ways! This has been going on since 09-03-2010 we have seen several dr's they have all either told her i have no idea what is wrong with you or instead of saying i dont know they tell her she is stressed out and that is why her body is doing this...but psych dr told her she isnt stressed to the point that her body would do this to her he said the stress she does have is caused by this condition and he felt it was medication induced...finally we found a local dr on the internet and we started seeing him in sept of 2011 she got her first botox shot for her neck on 12-1-11 she has another scheduled in march. She takes klonopin, zanaflex, and sinemet and alot of each..just had to raise her zanaflex again on thursday the 16th cause she had been in a storm,episode whatever its called since monday the 13th. Her back isnt spasing so much and her hand is almost open, and can almost move her arm but her leg is still lost it will not move when she wants it to but it will twist and turn on its own...go figure! Im terrified at how fast this is progressing and how disabled she has become it breakes my heart to look at her and know just how horrible she feels to be so young and so dependent on me for everything.....i hope your dr heads off your issues quickly before they completely take hold i cant help but to wonder if she would have recieved the proper treatment back in sept 2010 would she be this bad right now? Im here if you wanna vent or ask questions im not sure how big of a family you have but make sure you are surrounded by them as much as possible dont let this get into your head try to stay as positive as possible and keep positive people around you it helps my mom alot..i hold back my emotions as much as i can for her she has enough to deal with.

Amanda

 
Old 02-21-2012, 08:16 AM   #5
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Re: Dystonia: Help

Hello lee,

mom has medication induced dystonia it all started on 09-03-2010 with her second pill of the day of a beta blocker called soltalol and at an extremely high dosage we have come to find out too late of course...dr's havent agreed that it was this specific drug or this drug mixed with her requip for her restless leggs (in otherwords i cant prove without a doubt who did this to her). Since 09-03-10 she has done nothing but go down hill and fast! My mom used to be superwoman she would re-arrange furniture and all sorts of things all by herself there wasnt anything she couldnt do....now she cant get out of bed or off the couch or out of her power chair without assistance. Im terrified i have never in my life seen something so horrible happen so fast. Of course with the medicine that did this to her not being on the "list of known drugs" to cause this reaction all the dr's assumed my mom was stressed out and her body was doing this due to stress (which is definately not the case) we finally have a good movement disorder neurologist i found on the internet one night while trying to research my moms condition since the dr's wouldnt. She got her first botox shot on 12-01-11 she is due for another in march. We call her dystonia secondary generalized dystonia...(secondary because is caused by medication not genetic that we know of..and generalized because her whole body is affected and rapidly so).....please do not be afraid to speek your mind to the dr and demand answers and seek new dr if you dont get what you need i hope your road will be easier since they believe it to be genetic....mom takes zanaflex, baclophen, and klonopin, and sinemet and alot of it but all it does is keep her episodes at bay sometimes but she still has constant extreme pain and twitching...im praying for you...there isnt a day that goes by that i dont cry or throw up i feel so helpless that i cant do more for her...stay positive and keep positive people around you at all times dont let this get into your head....im here for you if you need to talk or vent!

Amanda

 
Old 02-22-2012, 12:31 PM   #6
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Re: Dystonia: Help

Amanda:

I am so sorry to hear the terrible things you and your family are having to go through. I am only 31 years old and was in the prime of my life until three months ago and this dystonia jumped on me. I would get tired and have some spasms but did not think nothing about it. Just thought it was that had done too much work that day. Ever since I have been in terrible pain and twisting. My left toes are straight up in the air and cannot be moved. My physical therapist has never seen anything like it. I have had to stop work and can only walk very short distances. Most of the time I am in a wheelchair. My leg and foot constantly on the move.. They twist and turn all kinds of ways I did not know they could turn. Before I was on the clonazpem I could not feel my leg, but now the feeling has come back and the pain is terrible!!! The days are long and dreadful!! Most of the time I sleep all morning because the medicine makes me so so sleepy. I just got a call from the movement doctors and they cannot move up the appointment but the lady said that if she had a cancelation she would call me. I am forunate to live within thirty minutes from one of the worlds greatest hostpitals in the world. The doctor I am going to see is world known in the field of movement disorders. I am looking forward to seeing him.
I am so so thankful to have a family that understands and is right hear with me. My wife and I have only been married 2 years and she is great!!! I don't know how I would get through this if it wasn't for her!! The mental strain I have gone through is tremenous!!! I am not use to staying inside. I was raised on the farm and always working outside and doing something and now that I cannot it has been a tremenous change. I am trying to stay postive but it has been work in progress!! Thank you for listening to me vent!!! I hope the best foru you and your family and if you need to "vent" as I call it reply back and I will listen!!

Good Luck!!

Lee

 
Old 02-22-2012, 02:01 PM   #7
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Re: Dystonia: Help

Oops didnt mean to post 2x's i submitted 1at post and didnt think it went so i wrote another lol


have a great day

amanda

 
Old 02-22-2012, 02:13 PM   #8
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Re: Dystonia: Help

Lee,
have you and your wife joined any of the dystonia support groups? I have search and i cant find any local groups in my area

 
Old 02-22-2012, 04:38 PM   #9
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Stonewall1 HB User
Re: Dystonia: Help

Amanda:

No we have not joined any support group and to tell you the truth we haven't tried. I thought that when I went to the movement doctor I would ask if there were any in our area. I have had a terrible afternoon with the twisting and turning. The doctor emailed me this afternoon and said that my viatamin D is very low and to take more D. I just took my clozanepam or Klontin ( sorry about the spelling) . I hope it works pretty fast!!! Legs are hurting terrible. Have you and your family joined a group? I heard from another patient at the emg doctor's office the other day that there are a lot of groups up north but not too many down south where I live. They were from Boston and moved to the Charllote NC area. I am near the Raleigh/Durham area and have been going to Duke doctors. I thought I would ask the doctor when I go about the groups.

Have a good Night

Lee

 
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Old 02-23-2012, 10:50 AM   #10
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Re: Dystonia: Help

I have been searching for local Toledo oh groups but haven't found one yet so I decided to join this board to talk to other people who understand us. So sorry to hear bout your bad day...hoping today is better for you!!!! Hugs and prayers for you and your family. Happy Thursday!!!!!

Amanda

 
Old 02-23-2012, 11:05 AM   #11
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Re: Dystonia: Help

Good Afternoon Amanda:
I am having a better day today thankfully!!!! I feel better today from yesterday. Did not sleep good last night from the pain in my leg and the twisting and turning. This morning I slept until 12 and got up feeling better. The clozenpam makes me so so sleepy.
How is you mother? I hope and pray that she is getting some relief. I was wondering if you had tried to see if there is a support group in the cleveland area near the cleveland clinic? Just an idea?? Hope you have a great day and you and your family are in my prayers!!

Lee

 
Old 02-23-2012, 12:23 PM   #12
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Re: Dystonia: Help

yes she is actually doing a little better herself today she can now lift her leg up almost 2 inches, which is better than it has been since monday the 13th when it stoped working completely i think the increase in her zanaflex is finally kicking in. About the support group, i really have to stick close to home, i work full time i have 3 boys 2 dogs and i take care of mom during the week until thursday when i take her back home. i only live about 20 min from my mom but it kicks her but just to get loaded up to come to my house and home again. im glad to hear your feeling a little better today..hopefully tomorrow will be even better then today. Have a good day.

amanda

 
Old 02-28-2012, 04:19 AM   #13
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Re: Dystonia: Help

Amanda:

Just wanted to check in with you and see how your mom is this week? I hope she is doing better!! I have had a not so good week after 2 falls this weekend. My "good" leg has been hurting after falling off the bed Sunday nite. My hand has been twisting and neck too. My balance has been off this week too. Does your mom have problem with balance and gait?? Anyway I just wanted to check in with you and hope you and your family are doing better!!! I am here if you need to vent!!

Lee

 
Old 03-07-2012, 09:47 AM   #14
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Re: Dystonia: Help

Hello lee,

sorry i havent been on here in a while its been a crazy roller coaster since 01-13 with just very few good days. Mom just started a new med to go with all her other meds and it seemed to be working for the first few days but yesturday and last night were kinda bad again but she did manage to get a few minutes of sleep here and there. We go back to her neurologist on monday for more botox shots in her neck and im hoping that maybe he can give her some in her foot and hand so that they will let go. How long until you get to go see your neurologist i hope its soon! Have a great and hopefully pain free day!

Amanda

 
Old 03-07-2012, 01:15 PM   #15
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Re: Dystonia: Help

Hey Amanda:
I am glad that your mom is doing some better. I hope the the new meds and going to see the doctor will help her feel better. I go and see the movement disorder specialist on April 4, and I tried to get it moved up today but the lady said they did not have an earlier appointments. So I guess its April 4th. I have had some new developments. I was tested for Lymes disease and Rocky Mountain Spotted Fever. NO Lymes but I was low postive for the Rocky Mountian Spotted Fever. The doctor started me on an antibotic and gave another blood sample. They are now thinkning that my dystonia could have been caused by this. Low postive means that I have had the infection in the past and is still in me. I will be so so so so glad to go and see this movement doctors.. I have had so many if's during my sickness. My dystonia is about the same. My had and arm last week twist so bad tuesday and wednesday that my hand was twisted almost past the same shoulder. I hurt so bad but after 3 days it released. My voice is a little better.
Well I hope you and your mother get some better news when she goes to the doctor. Please keep me up to date on her progression.

Have a good day!!

Lee

 
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